I have a bedridden dementia patient who is lucky to be able to remain in her house. She receives 24/7 care from long-suffering, dedicated and kind nurse’s aides. Her family has returned from the East Coast, and renovated the lower floor of the house into an “in-law” apartment so that they can be there for her. There’s always someone with this patient. Her daughter prepares her favorite meals. She seldom has to wait more than a few seconds before her caregivers attend to whatever she wants. Nurse practitioners from both my practice, and from a hospice agency check on her weekly.
This patient has no “unmet needs.” She is surrounded by people who care for her conscientiously. I and my staff monitor her medical issues, which are many. Her caregivers make sure she is clean. Her family keeps her well-fed and entertained. She can decide what she wants to do and when.
Yet even with this careful care, with constant check-ups and adjustments to her daily routine and to her medications, this patient acts out. She cries, “Help me! Help me!” endlessly, even though someone is with her at all times. She will refuse to take her medications. She will refuse to allow herself to be bathed. She will refuse to allow her caregivers to change her diaper. She will refuse to eat. She will argue. She will get nasty.
Even at this, her attitude is far better than it would be without careful management of her case. Without a complicated regimen of medications, her behavior would be far worse. In the hospital, she has thrown metal meal trays at nurses. She has tried to bite her caregivers, who have been with her for almost a decade. She has kicked and screamed.
Why am I detailing this case? Because I think it illustrates that even with extraordinary day-to-day care, even with careful medical monitoring, dementia patients may still exhibit bad behavior.
In the field of geriatrics, many hold the view that “All bad behavior results from unmet needs.” The idea is that dementia patients cannot communicate what they want. They get frustrated. Then they act out. The idea follows that if you love these patients enough, if you attend to their needs effectively, then the bad behavior will disappear.
I think this idea is far too simplistic. I think this idea makes family members and caregivers feel guilty needlessly. I think this idea often keeps psychiatric help from troubled dementia patients who need it.
Of course, we should first rule out “unmet needs.” Caregivers and medical professionals should always investigate whether an underlying pain or medical problem is causing a problem behavior. They should always first try to adjust day-to-day routines to respond to an issue.
But sometimes, many times, you do everything, you rule out everything, and still the problem behavior persists. Even if you do manage to make the problem a bit better, you may not be able to make it disappear completely.
Alas, in many cases, you simply cannot “love away” a behavior problem in a dementia patient. And thinking that you always can make dementia better with more love and care ignores what a complex and difficult disease this is.
If you have an elder who is behaving in ways that cause problems, don’t assume it’s your fault. Get help. Do what you can. If the solution isn’t perfect, accept that.
Elizabeth Landsverk, MD ElderConsult Geriatric Medicine